We are way past time for an updated blog post.
Tiernan is now a cool, confident 12-year-old who goes to my school! He is rocking it in 6th grade and says his class is his most favorite ever! He is learning to play cello in the NVI orchestra and also takes horseback riding lessons and gets to start swimming lessons again since before the pandemic hit.
Oh. Also, there has been a pandemic that shut us all down for a year and a half. We have moved to a new house, added another puppy, and we are all fully vaxxed, boosted, and ready to move on already!
I also just looked at the last blog post which was just before his MRI for his seizures. The long and the short of that was that it was definitely abnormal, but ultimately it was due to scar tissue, likely from interventions as an infant. (my own personal opinion that was sort of corroborated by Dr. Korol.) After about 2 years on Keppra (and the rage that accompanied the Keppra) Dr. K ordered a 24 hour EEG to see what was going on and the great news was that she saw absolutely no seizure activity and promptly D/C'd the Keppra. Thank GOODNESS! That was no joke where the mood swings were concerned. He is now considered seizure-free but we still have some rescue versed just in case.
With regards to his heart, Tiernan has been incredibly stable for a long time. We feel so fortunate and have been so grateful to Dr. Park and Northwest Children's Heart Care. However, our insurance company dropped them as providers and, due to a glitch during open enrollment, we ended up not being able to switch to an insurance company that would allow us to stay with Dr. Park. So we have made the move to Seattle Children's South Sound Clinic and had our first appointment with Dr. Penalver today.
The 12-year-old telling mom she does NOT need to document every single thing!
She disagrees.
Tiernan and his new cardiologist, Dr. Penalver
Because their records have a gap of 12 years (the last echo they have of his heart is from 2009) he needed the most in-depth echo as well as the EKG and he won the grand prize of a 24-hour Holter monitor. He is unimpressed with the archaic technology involved with that and just doesn't get why they don't have a better option by now. We will have those results in the next 2 weeks or so.
Regarding his heart, Dr. Penalver is really impressed with how he is doing. As we already know, the main thing we are watching is his mitral valve. That is holding steady at mildly moderate (or moderately mild?) regurgitation. He said that there is no reason to rush into any intervention since he's been so stable and he doesn't seem to be having any reduced energy or exercise intolerance. It also seems like Dr. Hanley might be closer to retirement than Tiernan is to needing his valve replaced. In light of that, we talked a little about the surgical staff at Seattle Children's, which has changed a lot since 2014 when Dr. Chen was there. Dr. McMullan is the Chief of Pediatric Cardiac Surgery now. So it is probably for the best that we are now a little more connected to SC Cardiology at this point.
I should probably spend a little more time on that valve timeline though because that was pretty great news. Dr. Penalver even said it's possible he will "never" (????!) need a new valve? That is not the most likely outcome, but we are going to just continue to let his exercise tolerance and heart function tell the story. As long as nothing concerning comes of the Holter monitor, we will probably not see him again for another year.
I continue to be amazed at our good fortune where cardiologists are concerned. If we can't be with Dr. P(ark), then Dr. P(enalver) will be a great alternative.
No comments:
Post a Comment